Sunday, February 8, 2015

Faces of CHD: Meet Garrett

February 7-14 is Congenital Heart Defect Awareness Week. To help raise awareness, spread knowledge and share the effects of this disease, Jayme of The Paper Deer Photography Blog, Christie of Lemon Squeezy Home and Kierra of The Irvine Home are each sharing one story of a child with CHD every day to showcase the trials, triumphs, journey and heartache of this devastating disease. We invite you to read and share this project to further our voices. Thank you. #Facesof CHD

Congenital Heart Disease was something I was not familiar with
at all. It was nothing that had ever crossed my mind until I became pregnant
with my sweet son Garrett. When I was 24 weeks pregnant, I had a routine level
1 ultrasound, and the tech had noticed something wrong with our son’s
heart. It was such a hard day, and I just had this gut wrenching feeling in my
stomach that something wasn’t right. We waited for 2 weeks before we
could get into see a specialist to have a fetal-echocardiogram, and when we did,
they could tell us exactly what it was that our baby boy had. Garrett had a
very complex and very rare heart condition called Tetralogy of Fallot with
Absent Pulmonary Valve. This specific heart condition is a very complex one
that affects the heart and also the airways leading to the lungs. They told us
that Garrett would have about a 70% chance of survival once he was born, and
that this was a very grim diagnosis. Because you cannot see the airways on
ultrasound, until Garrett was born, we didn’t
know if he would will be breathing on his own, or not breathing at all. Mine
and Jake’s (my
husband) hearts just broke. We didn’t
know what to think or feel in that moment, but we knew no matter what, we were
going to do all that we could for our sweet, and amazing little fighter!

Garrett was born on Sept. 4, 2012 in SLC, UT. When Garrett was
born, he was not breathing on his own, and immediately after birth, was
intubated and placed on a ventilator. He was very sick, and it took about 6
hours after he was born to just to get him stable enough to walk over to the
adjacent children’s hospital. I was able to only see him for
about 30 seconds before Lifeflight rushed him off to the NICU at Primary
Children's Hospital. It was heartbreaking, and not how I pictured meeting my
sweet first born baby. They tried Garrett on 4 different ventilators, hoping that
one of them would help stabilize his labs and help him move air. Their last resort
was a specialized ventilator that the hospital had only had for about a year.
They placed Garrett on his belly to help elevate the pressure from his very
large pulmonary arteries, and finally after all of this, he became somewhat “stable”.
Once Garrett was stable, he had to be heavily sedated just to help him tolerate
the simple things, such as a diaper change. Due to his floppy airways, Garrett
could turn blue instantly – sometimes multiple times during the day, just
by getting slightly upset. This was the scariest and hardest thing to witness. Because
of his critical state, we couldn’t hold Garrett either,
which was so incredibly heartbreaking. As a mother, you just want to fix
everything, and knowing I couldn't, was a harsh reality.

At 3 weeks old, Garrett had his first open heart surgery. We
were so blessed that the 5 hour surgery went very smoothly. The surgeon told us
that he was able to fix the heart problems, but his airway problems could not
be fixed with surgery. The only thing we could do was wait for him to get
bigger and stronger. The days and weeks following surgery were an absolute
roller coaster – with
more bad days, than good ones. Garrett was still on his ventilator and
struggling to come down on the support. He was also having a difficult time
being weaned off his medications, and we found ourselves going up on support
and up on his medications.

Months passed, and Garrett was growing, however, his airways
sadly were not, and we found ourselves still in the NICU. At 3 months old,
Garrett was still on the vent, and he received a trach. He would still have
"blue spells" as we called them, and though they weren't as frequent,
they still hadn’t
stopped. We felt so helpless, but our faith stayed strong. We continually
prayed for a miracle for our strong boy. We prayed for strength to get through
the next day, and that the doctors would know what to do to get him better, and
get him home. Leaving him every night in the NICU was heart wrenching, and so
many times I wished I could take his place.

Thirteen months passed, and Garrett was still struggling. Over
the months we had also increased the ventilation support, and we ended up
maxing out the ventilator settings – even higher than most adults would be on. Garrett’s
vent settings were so high, but because he was still having blue spells, we
were not able to take him home. We would spend all day everyday with him in the
NICU, holding him, reading books, playing, watching movies, and doing all of
his cares. He was transferred out of the NICU to a step-down facility about 20
minutes away in hopes that we could keep trying him on the home ventilator, and
hopefully continue to wean down the support he was on.

In December of 2013, Garrett became very ill with a horrible
stomach virus, which landed him in the PICU fighting for his life. We were
weeks away from losing our sweet boy. Garrett’s
lungs, because of the high support, were expanding so large, that they were
pushing on his rib cage. Garrett needed help, and he needed it soon. We decided
to contact a Doctor in Michigan that we had read about in a CNN article some
months back. We wanted to see if they possibly thought Garrett might be a
candidate for their new and special air splints. It was a non-FDA approved
surgery, and it had only been done on one child before Garrett. Jake and I really
felt that is was Garrett’s best and only chance.

We had briefly talked to the amazing ENT surgeon Dr. Green in
Michigan just a few months prior, but the timing just didn’t
feel right then. However, now we were ready. Dr. Green told us about these airway
splints that are made with a 3D printer and would fit and be placed on the
outside of Garrett’s
airways – to help
hold them open. The thought of another surgery, traveling across the country,
trusting doctors we had never met with our son’s life, and not knowing
where we were going to live, was incredibly overwhelming. But we got the
strongest feeling that that this was Garrett's chance, and it exactly what we
needed to do. So we called Dr. Green back and told him that we were ready to
come. We sent him Garrett’s updated scans, and we
waited for approval from our insurance. Within 6 days, we were on a plane and
heading to Michigan. The way things fell into place, and went so smoothly to
get Garrett there, was nothing short of a miracle itself, and a confirmation
that this was the right decision for our sweet boy.

Garrett was the second child to have this non FDA approved
surgery. On January 31, 2014, we handed Garrett over to Dr. Green’s
medical team for 7 hour surgery. It was one of the longest, and scariest days
of our life. When the surgery finished, the doctors came to talk to us with the
biggest grins on their faces - we knew it that was a good sign! Things went
perfectly! Garrett came out of surgery on half the vent support that he went in
with. It was a miracle! We felt like we could finally see a light at the
end of this never ending tunnel. We all just cried. It almost felt too good to
be true. It was an answer to our prayers, years of prayers and waiting.

The coming weeks Garrett continued to get stronger. His labs
started getting better and better, and the medications he was needing were able
to be weaned. He was happier, smiling more, and so much more awake. Garrett
never had "blue spell" again. Soon, Garrett transitioned to a home
vent on very minimal support, which was something he couldn't tolerate prior to
surgery for more than just 5 minutes.

After 3 months in Michigan, we were on a plane back home to
Utah! We had just witnessed miracle after miracle during our stay in Michigan,
and so Michigan will always hold a place in our hearts.

Finally on April 1, 2014, we brought our sweet Garrett home – just
shy of being 19 months old! What an amazingly happy day that was! Once we
wondered if that would ever happen...and here we are – HOME! The drive home with
Garrett in the backseat felt like a dream. Jake and I couldn’t
believe that after 19 of the hardest months of our life, our sweet baby boy was
coming HOME.

Since then, Garrett has gotten so much stronger! We celebrated
his 2nd Birthday here at home with close friends and family this past
September. His last ECHO confirmed that his heart is functioning great, and we
don’t need to go back for 9 months. He’s
such a happy, easy going, Mickey Mouse loving boy! He now spends most of his
day off of the vent, playing with toys, mastering rolling all over our family
room, and is starting to scoot/army crawl. We feel incredibly grateful for each
and every day we get to spend with him! Garrett is our hero.

What
does CHD Awareness mean to me?

CHD awareness is so very near and dear to my heart now. It’s a
group I never knew existed until we found out about our Garrett. I believe it
is SO important to raise awareness, because it can happen to anyone. No one in
my family, prior to Garrett, have ever had severe heart conditions. It is
random, and it can happen to anyone out there. Knowing the basic facts, can
help save a child. Not all children are diagnosed in utero. There are many
times it isn’t detected until the baby is born, or even
weeks later that the heart condition can manifest itself. Please, make sure
your baby has an oxygen saturation test in the hospital before you take them
home. This is one very easy, non-invasive way to possibly catch a CHD. I know
many states, mine included, that are passing laws that each child to have this
test before they go home. I’m so happy to hear that!

If you know someone with a CHD, keep in touch with them. Ask how
they're doing, ask how their baby is. I always was so happy when people would
ask me about Garrett - I LOVE talking about my amazing, hero boy! Let them know
you care. Having a child with a CHD is a lifelong road. There is no cure.
Garrett was born without a Pulmonary Valve, so as he grows it will need to be
replaced. There are more heart surgeries in our future, but we’re
just taking it one day at a time, and living every day to its fullest! We feel
so grateful that we still have our sweet boy with us, as he is such a joy to
have around!

3 comments:

You and Jake continue to be wonderful examples of "Super Parents". You impress me with your desire to learn everything you can about Garrett, his condition, and what you can do to help him! Love the 3 of you!